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Journal of Multidisciplinary Healthcare Volume 9, 2016 - Issue
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Original Research

Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease

Lemuel J Pelentsov1 School of Nursing and MidwiferyCorrespondence[email protected]
,
Andrea L Fielder2 Sansom Institute for Health Research;3 School of Pharmacy and Medical Sciences, University of South Australia, Adelaide, SA, Australia
,
Thomas A Laws4 School of Nursing and Midwifery, Faculty of Health, Keele University, Staffordshire, UK
&
Adrian J Esterman1 School of Nursing and Midwifery;2 Sansom Institute for Health Research;5 Australian Institute for Health and Tropical Medicine, James Cook University, Cairns, QLD, Australia
Pages 425-433 | Published online: 09 Sep 2016

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Yoichi Tanaka, Yuki Nishi, Yuki Nishi, Michihiro Osumi & Shu Morioka. (2017) Uncovering the influence of social skills and psychosociological factors on pain sensitivity using structural equation modeling. Journal of Pain Research 10, pages 2223-2231.
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Articles from other publishers (9)

Laura Inhestern, Maja Brandt, Joenna Driemeyer, Jonas Denecke, Jessika Johannsen & Corinna Bergelt. (2023) Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy. International Journal of Environmental Research and Public Health 20:7, pages 5360.
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Elena Marcus, Anna Latos-Bielenska, Anna Jamry-Dziurla, Ingeborg Barišić, Clara Cavero-Carbonell, Elly Den Hond, Ester Garne, Lucas Genard, Ana João Santos, LRenée Lutke, Carlos Matias Dias, Christina Neergaard Pedersen, Amanda J. Neville, Annika Niemann, Ljubica Odak, Anna Pierini, Juan Rico, Anke Rissmann, Judith Rankin & Joan K. Morris. (2022) Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey. BMC Pediatrics 22:1.
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Sally M. Bristow, Debra Jackson, Tamara Power & Kim Usher. (2021) “Rural mothers’ feelings of isolation when caring for a child chronic health condition: A phenomenological study”. Journal of Child Health Care 26:2, pages 185-198.
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Mara Scharping, Heiko Brennenstuhl, Sven F. Garbade, Beate Wild, Roland Posset, Matthias Zielonka, Stefan Kölker, Markus W. Haun & Thomas Opladen. (2022) Unmet Needs of Parents of Children with Urea Cycle Disorders. Children 9:5, pages 712.
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Tai L. S. Pasquini, Sarah L. Goff & Jennifer M. Whitehill. (2021) Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents’ experiences. Orphanet Journal of Rare Diseases 16:1.
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Amie Koch, Arthi S. Kozhumam, Erika Seeler, Sharron L. Docherty & Debra Brandon. (2021) Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis. Journal of Pediatric Nursing 61, pages 67-74.
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Kate Khair & Lemuel Pelentsov. (2019) Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale for Rare Diseases (PNS‐RD): A single‐centre pilot study. Haemophilia 25:5, pages 831-837.
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Ying Dai, Runxian Ouyang, Le Li, Yongfang Deng & Yan Lin. (2019) Parental self-efficacy in managing the home care of children with Hirschsprung's disease or anorectal malformation: Development and validation of a new measure. Journal of Psychosomatic Research 123, pages 109726.
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Hannelore De Maeseneer, Dirk Van Gysel, Sofie De Schepper, Carsten R. Lincke, Barbara J. Sibbles, Josette J. W. M. Versteegh, Welling Oei, Robert F. Pangalila & Suzanne G. M. A. Pasmans. (2019) Care for children with severe chronic skin diseases. European Journal of Pediatrics 178:7, pages 1095-1103.
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